We All Know How This Ends by Bloomsbury Publishing

Unc or r ec t eds ampl et e x t

Contents Introduction 7 This book begins at the end We really need to talk about death and dying Why we really don’t want to talk about it The Life. Death. Whatever. manifesto What is Five Things?

7 13 17 18 20

What is Unsaid?

Death & dying

Can doulas be part of the future of end-of-life care? Why I became an end-of-life doula How to become an end-of-life doula What does a good doula look like? From doula to patient and back again When you’re first diagnosed Debunking the myths of palliative care and hospices Getting the most from your consultations with your doctor and specialist Sex and intimacy are still just as important when you’re unwell Dying doesn’t look like it does in the movies How to be there for someone when they are dying Preparing for death: doing your death admin Making funeral arrangements in advance Different places to die COVID-19: A pandemic in our lifetime ‘Out of order’ death Baby Amy The toll illness can take on relationships Assisted dying A matter of life and death The undeniable beauty in the impermanence of life

23 27 32 34 35 42 52 56 59 60 66 69 73 74 82 85 88 93 98 99 105

Funerals 106 Why I became a funeral director Not all funeral directors are the same How to choose a funeral director DIY funerals Seeing the person who has died can be a profound and meaningful experience What really happens after someone has died? Why would I want to see someone after they’ve died? Allowing children to do what is right for them Why funerals really matter How to have a good funeral

107 119 123 126 129 131 136 140 144 146

Funerals & COVID-19 Planning your own funeral Ask a funeral director anything A truly poetic ending

167 171 178 182

Grief 183 What is grief? Your life after their death – the things we want you to know about grief Growing around grief Grief SOS How to support a grieving friend What to say when you don’t know what to say When a partner dies Grief lasts a lifetime

186 189 197 203 207 214 216 225

We need to talk 226 How to talk about death and dying How to talk to children about death, dying and grief

228 234

All that’s left Unsaid 247 Words left unspoken

247

Life & living 254 Regret 256 This could be the last time 261 The essentials of self-care 266 Kintsugi: emotional damage and repair 271 Everything we’ve learned about life and living from working with death and dying 274

Get involved with Life. Death. Whatever.

286

The dictionary of death & dying

287

Resources & recommended reading

292

Acknowledgements

298

Index

300

About the authors

304

Contents Introduction 7 This book begins at the end We really need to talk about death and dying Why we really don’t want to talk about it The Life. Death. Whatever. manifesto What is Five Things?

7 13 17 18 20

What is Unsaid?

Death & dying

23 27 32 34 35 42 52 56 59 60 66 69 73 74 82 85 88 93 98 99 105

107 119 123 126 129 131 136 140 144 146

Funerals & COVID-19 Planning your own funeral Ask a funeral director anything A truly poetic ending

167 171 178 182

186 189 197 203 207 214 216 225

We need to talk 226 How to talk about death and dying How to talk to children about death, dying and grief

228 234

All that’s left Unsaid 247 Words left unspoken

247

Get involved with Life. Death. Whatever.

286

The dictionary of death & dying

287

Resources & recommended reading

292

Acknowledgements

298

Index

300

About the authors

304

Introduction [A + L]

In this book, the word death appears 684 times. The word life appears 752 times. So although this is a book about death, it’s actually a book about life.

This book begins at the end One day, you’ll eat your very last meal. You’ll speak your final words. You’ll take your very last breath. Your heart will stop beating. Your blood will no longer flow. You will die. You will be dead. Death is our future, the only future of which we can be truly certain. It’s inescapable and unavoidable. Everyone who is born has to die. Life is terminal. There is no cure. Neither life nor death is black and white. We don’t come with an expiry date. We might die tomorrow, we might die next week, or we might die in 50 years’ time. Worldwide, 151,600 people die each and every day. That’s one hundred and fifty one thousand and six hundred people. In the time it takes to watch an episode of This Is Us on Amazon Prime, 6316 people have died. If you think about how many other lives each life, and therefore each death, affects, that means countless more have been bereaved and are grieving. Some 105 people have died in the minute it’s taken to read these statistics. That’s almost two people every second. More than 500,000 people die in the UK every year. At least one child in every school classroom is bereaved and growing up without a parent. Almost 40 per cent of us will be diagnosed with some form of cancer in our lifetime.

INTRODUCTION

About 2.5 million people are currently living with cancer in the UK. Around 40 per cent of all people over the age of 65 are living with life-limiting long-standing illness. These are stark, sobering statistics and yet we still don’t openly talk about death or teach our children how to live with the inevitability of it. We’re Anna Lyons, an end-of-life doula, and Louise Winter, a progressive funeral director, and together we’re the team behind Life. Death. Whatever. We joined forces several years ago to find a way to get everyone talking about death, dying, life, living, illness, funerals and grief. Our mission at Life. Death. Whatever. to help you to have a more empowered approach to whatever you’re going through. As an end-of-life doula, Anna supports people who are living with serious illness, their family and friends, and people living with grief. Her aim is to help people live as good a life as possible until the very end. People who are dying are living right up until their very last breath and she believes it’s essential to support people to experience a life they can enjoy for as long as possible. As a progressive funeral director, Louise has an unconventional approach to her work. Her mission is to encourage everyone to really think about funerals and why we have them. She believes that a good funeral can be transformational in helping us to acknowledge and accept that someone has died. Anna might be there when your sister finds out that her cancer has a devastating prognosis and support her as she decides how she wants to live with her illness. Louise might be the person you call when your sister has died. She will help you to find a way to say goodbye, in a way that works for you. Our experiences have shown us that death is a normal part of life and dying is part of living. Acknowledging and accepting that one day we will die is fundamental to living a full life. It’s as simple and as complicated as that. We don’t believe death is a taboo, as the media would have us believe. But we do believe that as a society and as a culture, we shy away from it because we don’t know what else to do. However, we can’t ignore death and dying. It’s not going to go away. Our only hope is to change the way we see it and find a new way of approaching it that’s helpful and relevant to the times in which we live. This book isn’t a lament on the loss of life, because we believe that death and dying don’t have to be gloomy or taboo subjects. Talking about death and dying can be life-affirming and life-enhancing. That’s why we created Life. Death. Whatever. It began life as a groundbreaking festival about death, in partnership with the National Trust’s Sutton House, a Tudor house with an eclectic history in Hackney, East London in October 2016. We hosted an art exhibition as well as a line-up of events, installations and workshops, encouraging creative reflection on life, death and everything in between.

WE ALL KNOW HOW THIS ENDS.

We positioned birth, life and death together under one roof and challenged visitors to the house to consider all three as one. We can’t have life without birth, and we can’t have life without death. These three, intrinsically linked by the mere nature of existence, were spread out across the uneven walls and floors of the Tudor house, encouraging visitors to see the whole rather than just two-thirds. We dared them to imagine that life is finite and encouraged them to consider that ignoring this truth will not make it shrink quietly back into the shadows. We stimulated, provoked, amused, inspired, disgusted and entertained all who came by. There were interactive installations, coffin ball pits, sculptures, paintings, site-specific sound and mixed-media pieces, photographs and films. We gave visitors the opportunity to add their unspoken words to an ever-evolving piece called Unsaid, and invited them to enjoy afterlife-themed cocktails from a pop-up bar called ‘The Waiting Room’. After the festival, Life. Death. Whatever. developed into an international community of people from many different disciplines, united in a commitment to opening up the conversation about death and making it something we can all live with. Life. Death. Whatever. then became an approach, a way of working, a common framework and a language, based on principles of empathy, compassion and kindness, underpinned by an awareness of the inevitable. It affected, and then changed, the way we work with death and dying, as well as how we engage with life and living. In our work, both independently and together, we have unparalleled access to life at its most heightened, vulnerable and fragile. We inhabit the liminal space as people transition between life and death, bearing witness to this once-in-alifetime experience. With this comes a wealth of understanding and lessons that teach us so much about how to live, not just how to die. Throughout this book, we’ll talk about the people we’ve known and worked alongside, the funerals we’ve facilitated, and the approach we’ve taken to our work, both together and separately. We’ll share our experiences with you, from the ordinary to the extraordinary. The people we’ve worked with have had a profound and transformational effect on our own lives. We’ll share the heartbreaking, surprising and uplifting stories that have inspired us to live, love and, sometimes, to let go and walk away. We’ll reflect on the blessings and tragedies of life, the exquisite agony and ecstasy of being alive, and the fragility of everything and everyone we hold dear. The work we do doesn’t prevent our grief, it simply means we have a better idea of what we need to do when faced with it. When Louise’s granny died, and when our friends Jon Underwood, Saima Thompson and Kimberley St John died unexpectedly while we were writing this book, it didn’t mean we were immune to

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WE ALL KNOW HOW THIS ENDS.

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grief and pain. It didn’t mean that we didn’t cry; it simply meant that we knew the most helpful reaction was to let ourselves do whatever we needed to do and feel whatever we needed to feel. This book is full of stories, conversations, insights and observations about how we deal with the fact that we’re all going to die. It’s for anyone who wants to know how we can have a more empowered approach to all matters related to our mortality. We’ll talk openly and honestly about dying, death, living, life, illness, funerals and grief. It might be an emotional journey but we hope you’ll stay with us for the ride. You’ll also hear from people in the Life. Death. Whatever. community who have been generous enough to share their experiences and reflections with us in the form of ‘Five Things’. This project started quite by accident in Anna’s kitchen on a Saturday night when we were reflecting on how amazed we were by the profound stories of love and loss people were sharing with us. We wanted to find a way for everyone to be able to tell their stories, and for others to be able to read, and learn from, other people’s experiences. Five Things has since grown into an international online campaign where everyone is invited to share what they’ve learned about whatever they’ve been through or are going through. We’ve shared Five Things about what it’s like to be diagnosed with cancer in your 20s, what it’s like to lose almost your entire family in a tragic accident, what healthcare professionals would like you to know about the reality of CPR, what it’s like to hear that a family member has suddenly died from COVID-19, what grief really feels like, and many more experiences besides. We’ve printed some of them in this book. Whatever you’re going through, we hope there’ll be a Five Things that will resonate with you. We hope that pages are filled with compassion, love and kindness alongside a bold honesty you don’t usually find when reading about death. We don’t shirk away from our subject matter, and we don’t use euphemisms. In our work, no one passes away, they die. No one is at rest, they’ve died. We use the actual words, even when it’s difficult to hear them. Because we believe that by owning what’s happening, we’re better equipped to deal with the reality of what’s going on. We’ve written about what we can all do to make our lives and the lives of those around us easier and better, right up until the very end. It’s about how generosity, love, honesty and kindness with ourselves and others can change the way we grieve. If we can acknowledge the inevitability of our deaths, it can make a fundamental difference to how we live our lives. We believe it’s possible to embrace a lifetime of love, adventure, curiosity and wonder, acknowledging and accepting the inevitability of having to experience grief, loss and death.

WE ALL KNOW HOW THIS ENDS.

Because we all know how this ends. It ends.

P.S. This book is inspired by our experiences. If you recognise a fragment of yourself in our writing, know that you were of consequence to our work and to our lives. To those who have allowed us to share your journeys through life and living, death and dying, we wrote this book in your honour. P.P.S. We’ve made it easy for you to understand whose words you’re reading by using a key – [A] for Anna, [L] for Louise and [A + L] when we’ve written a section together.

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WE ALL KNOW HOW THIS ENDS.

Because we all know how this ends. It ends.

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FIVE THINGS YOU NEED TO KNOW BEFORE YOU READ THIS BOOK by Anna Lyons and Louise Winter

We really need to talk about death and dying [A + L] ‘Society has lost sight of the fact that we are all mortal and at some point we are all going to die. We’ve just got to accept that this is a normal part of life and make it as easy

1. We work in death and dying but that doesn’t make us experts. We can’t tell you when or how you’re going to die. We don’t know if there’s an afterlife or what’s going to happen next. Instead, we’ll share our reflections and insights based on the many people who have shared their journey with us, and how they’ve profoundly affected our own approach to living our lives. In doing so, we’ve tried to find a way to turn death and dying into something we can all live well with. 2. Take what you need and leave the rest. We’ve written this book so you can choose what’s relevant to you. You might be curious. You might have been wanting to think about and discuss this subject for a while but haven’t found a way. You might have just got married and made a decision to discuss the future. You might be facing the end of your life. Perhaps someone significant to you has just died. Whatever it is, there’s a section for you. This book is for everyone. 3. This isn’t a dirge on death but it isn’t a celebration of life either. We won’t gloss over difficult things. It’s about life as much as it’s about death. We won’t disregard grief or anything else gritty and uncomfortable. We’ll even talk about the reality of what happens when someone dies, warts and all. 4. We won’t talk in euphemisms. Although we’ll always do it gently and sensitively, we’ll say things as they are. Hopefully, by the time you reach the end of the book, you’ll understand why. 5. We’ve written about the people we’ve accompanied and supported, although we’ve disguised most of their identities. We’ve also shared some of our personal experiences of grief, loss and heartbreak because they’ve taught us the most important lessons about life. We’ve written about how something happened for us, our truth and our interpretation of events. We know it might have felt differently to you.

WE ALL KNOW HOW THIS ENDS.

as possible for people to talk about it, think about it and plan ahead.’ DR OLLIE MINTON, CO N SU LTA NT I N PA L L I ATI V E M ED I C I N E

There are three basic things we can rely on in this life of ours: 1. We’ll be born. 2. We’ll live. 3. And we’ll die. These three events are fundamental to our existence, and can sum up our finite lives. Birth, life and death are a messy business, but death is the only one we try to avoid altogether. We might talk about our fears of giving birth to our children, our concerns as parents, our frustrations with work and relationships, and the struggles we face in life, but rarely do we volunteer to talk about death and dying, especially our own. Birth is the beginning of the unpredictable adventure we call life. Death is the end. When someone dies, it leaves an irreplaceable hole in our lives. It hurts. We have no control over it. We don’t want to imagine that it will happen to us or anyone we know. We might not be able to imagine a world without us, or them, in it. No wonder we don’t want to talk about it. But how can we truly live a good life if we never properly acknowledge that one day it’s going to end and the people we know and love will die? Avoiding it won’t prevent it from happening. It is going to happen to all of us. How many of us would jump headfirst into marriage without truly thinking about the implications and consequences? Do we give birth with no thought as to how and where? Have you ever bought a house without stepping inside it first? Yet we tend to hurtle towards the end of our lives mostly without thinking about it, discussing it or really believing it’s going to happen. Death will happen, no matter how much we’re loved, how accomplished we are, how many Prada handbags we own, how many supplements we take, or how much money we have in our bank accounts. It might be 80 years from now or it might be tomorrow. Death is life’s great unknown. As a society, we hide death and dying behind closed doors, squirrelled away in metropolis-sized hospitals, nursing homes, hospices and suffocatingly warm

INTRODUCTION

FIVE THINGS YOU NEED TO KNOW BEFORE YOU READ THIS BOOK by Anna Lyons and Louise Winter

WE ALL KNOW HOW THIS ENDS.

as possible for people to talk about it, think about it and plan ahead.’ DR OLLIE MINTON, CO N SU LTA NT I N PA L L I ATI V E M ED I C I N E

INTRODUCTION

makeshift bedrooms hastily moved to the ground floor of someone’s home. We talk in hushed tones about someone’s life-limiting diagnosis. We play hide-andseek with our feelings and push our heartbreak far beneath the surface so we can outwardly maintain the guise that we’re coping. A recent report by the British Medical Association concluded that doctors continue to treat people who are dying when active treatment is no longer of any benefit. The report stated they do this because of pressure from patients and their families. Many doctors we have spoken to also feel that by acknowledging there’s nothing more that can be done, they themselves are admitting defeat and have failed. Death is not a failure. It’s a natural and normal part of life. If we view it as such, we might be able to approach it in a different way. If we discussed end-of-life issues regularly we wouldn’t find them so tricky to broach when we’re in a hospital bed talking about what might happen next. Doctors are not superhuman and we are not immortal. Things happen to us – we’re involved in accidents, we become unwell and our lives come to an end, sometimes sooner than we’d like or had imagined. The inability of a doctor to save our life is rarely a failure on their part. A member of the Life. Death. Whatever. community is a doctor who works in hospitals in London, specialising in emergency medicine. She talks about how the doctors she works with go outside to smoke a cigarette with their colleagues after a patient has died, often after aggressive and unnecessary attempts to keep them alive. Smoking a cigarette is their coping mechanism. It’s a paltry three minutes of therapy, before they’re back on the wards dealing with another emergency. Doctors, more than anyone, need to understand that our death is not their failure. If this were acknowledged and understood there might be less unnecessary, ineffective and aggressive treatment at end of life. We are all responsible for lack of good communication. Doctors can be hesitant and reticent, often because they haven’t been taught how to communicate; patients, families and friends can be understandably unwilling to hear the reality of a situation. When people are dying, we usually take gentle and loving care of them. Then as soon as they’ve died, we sometimes push them away, fearful of the reality of them being dead. Most hospitals don’t even have signposts to the mortuary, as though its very existence needs to be hidden away and denied. When someone dies in a nursing home, most require that they are immediately ‘removed’ by the funeral directors, who arrive at 3 a.m., dressed in black. They use the back doors and don’t tell the other residents what’s happened, leaving everyone wondering what happened to lovely Doris in room 23. Families rush to the nursing home to find their person has already been taken away, leaving them with no time or space to say goodbye.

WE ALL KNOW HOW THIS ENDS.

Why don’t we build nursing homes with adequate facilities for taking care of people after they’ve died? Why are the residents ‘removed’ from the community after death, as though they’re now something contaminated and unsavoury? Even hospices are often built without adequate facilities for caring for people after they’ve died. The simple addition of a chilled room could allow families, friends and the community the opportunity to come together to acknowledge what’s happened and say goodbye. Rather than hiding death away, so as not to distress the other residents, why not acknowledge it? These changes are simple, but could make a remarkable difference to our grief and our ongoing lives – it just requires a shift in the way we think about death, both as professionals and as members of the public, too. When someone dies, even if it’s expected, many of us panic and call the first funeral director we can think of on our high street. We rarely ask questions and just accept whatever we’re told. We pay huge sums of money for a funeral that might not serve our needs, fitting into the bronze, silver, gold or platinum package, defined by the number of limousines following the hearse. At a time of overwhelming grief, we might not know there’s any other way. We may have spent a lifetime going to funerals that didn’t honour the life of the person who has died. Far too often, we squeeze everything into a 20-minute service at the crematorium, strictly patrolled by funeral professionals who treat it as business as usual, seemingly forgetting that we’re there because a person has died. For over 100 years, our funeral directors have protected us from our dead. They mostly hide behind dusty net curtains in shabby funeral homes and use archaic language, distancing themselves, and us, from the reality of their work. Most have terrible websites and won’t put their prices online. They tell us that the person who has died needs to be embalmed because we couldn’t possibly cope with the reality of seeing them dead. They use language like ‘conveyance of the deceased’, rather than using simple language we can all understand. No wonder some of us have dismissed funerals, opting for a direct disposal service instead. A member of the Life. Death. Whatever. community who is a funeral director talks openly about the queue of coffins waiting to be unloaded from vans at her local crematorium. Is this what we want for our dead? Do we want to live in a society that doesn’t properly acknowledge and commemorate its members as individuals who deserve to be recognised, both in life and in death? Yet we can do death differently. Funerals can serve us in our loss, our suffering and our grief. They can be done well. They need to be done well. Our funerals really matter. After the funeral, we don’t know how to support each other in our grief. We cross the road to avoid awkward encounters. We stop talking about the person who has died, scared that someone will cry or show how they really feel. We leave

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WE ALL KNOW HOW THIS ENDS.

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people alone with their grief. We don’t show up for others when they need it the most, because we just don’t know how. We all need to take responsibility for our approach to dying, death, illness, funerals and grief. Let’s talk about it openly, embracing whatever comes up – our fears, anxieties, difficulties and upset. It’s hard to discuss the end of life at the end of life. It’s hard to make a good decision about a funeral if we’ve never thought about it before. It’s much easier to talk about all of it while we’re living a healthy life. Let’s encourage our teachers to talk about death and dying with our children, openly and honestly. Let’s include it as part of the curriculum. Rather than worrying that our children won’t be able to cope with it, let’s give them the opportunity to ask questions and decide for themselves. We might find these death-aware children are the more open-minded, resilient and emotionally switched-on adults of the future. If we spend our final days in a hospice in the UK, we’re lucky. Partly thanks to Dame Cicely Saunders, the founder of the hospice movement, the UK is considered to be the best in the world for end-of-life care. But we can still improve. Being the best in the world doesn’t mean we are good enough. Dying well is a basic human right. Dying with care, dignity and respect is the very least we should be able to offer ourselves and each other, whether we die at home, in hospital, in a nursing home or a hospice. If end-of-life issues were a part of our everyday conversation and chat, we’d find these subjects so much easier to broach. As children, we discuss our hopes and dreams for the future. We describe how we want our lives to look and feel but we don’t think about the end of our lives. We hear stories of our introduction to the world but rarely do we imagine stories of what it will be like at the end. What would our society and culture look like if we embraced death and dying as part of life and living? Would we be kinder and more compassionate individuals? Would we teach children about all the facts of life, rather than just some of them? Would we include our elderly in our lives rather than hiding them away in nursing homes? Would we equip our doctors with the right language and training and give them the support they need to support people at the end of their lives? Would we find a way for our society to properly acknowledge, and say goodbye to our dead? Would we build facilities that adequately cater for our needs when someone has died? Would our funeral profession employ individuals with the required qualities of emotional intelligence, gentleness and sensitivity? Would we have funeral homes that were run for the greater good of the community rather than to serve the bank accounts of shareholders? Would we be able to be there for each other in our grief, our sorrow and our pain? It’s time to end the deathly silence. Let’s talk about it and find out.

WE ALL KNOW HOW THIS ENDS.

Why we really don’t want to talk about it [A + L] ‘When we avoid difficult conversations, we trade short term discomfort for long term dysfunction.’ PETER BROMBERG, W EL L- K N OW N SPE A K ER A N D PH I L A NTH RO PI ST

For as long as we’ve lived, we’ve died. Religions, belief systems, faiths, rituals and traditions have all contributed to how we handle this simple fact of life. Historically, we were so much better at talking about death and dying. For example, the Victorians may have been reluctant to discuss sex, but they talked about death as part of daily life. Disease was prevalent, so living with death and dying was perfectly normal. Everyone was exposed to it from the moment they were born. No one was exempt from an early death in the Victorian era, no matter how privileged or wealthy they were. Only 40 per cent of babies born in the 1850s would reach their 60th birthday. Less than 10 per cent made it to their 80th. That meant that the Victorians saw a lot of dead people and attended a lot of funerals. As medicine’s abilities have improved, life expectancy has increased. Today, we may well be in our 20s, 30s or 40s without ever having to confront the reality of our mortality, see a dead person or attend a funeral. We now expect medicine to be able to prolong our lives. Over the last 110 years, we’ve witnessed death on a major scale with two world wars and a major flu epidemic. During the wars, millions of people left home and never returned. Everyone knew someone who had died, yet no one was taught how to grieve or deal with the difficulty and complexity of their emotions. The severity of the trauma was minimised. Society was taught to keep calm and carry on because, in order to survive, there was no other choice. In the face of such adversity, the British became known for their unwavering fortitude – the stiff upper lip. Today, we’re getting better at dealing with how we feel. As a society, we’re beginning to embrace sobriety, appoint therapists and willingly work on the quality of our lives. We go to yoga, we meditate, we eat consciously and we talk about our mental health. Life used to be about surviving, now it’s about thriving. We want to live happy, contented, purposeful and meaningful lives. Talking about death and dying is hard because it brings up so many difficult emotions, which most of us don’t know how to manage. At school, we’re not taught how to cope with the way we feel, the complexity of our emotions and our reactions to difficult situations. We’re getting better at it but we’re not there yet. Avoiding talking about death won’t prevent it from happening. By changing the way we deal with our emotions, we can transform the way we approach death and dying, and perhaps live fuller and more satisfying lives. The key isn’t to wait until we reach the end. It’s to deal with how we feel today.

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WE ALL KNOW HOW THIS ENDS.

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The Life. Death. Whatever. manifesto [A + L]

We believe that our relationship with death and dying can be re-imagined. Over the last few years, we’ve been working to redesign the dialogue around death and dying, to open it up and to find new approaches to this important subject. Our work, and the rest of this book, is based on seven core beliefs that influence everything we do: 1. Death is a natural and normal part of life Death isn’t separate to life. It might be sad, scary, moving, difficult, messy and profound, but it’s still a natural and normal part of life. We all face ‘death’ in some form on a regular basis – whether it’s the end of a relationship, a job change, the loss of a friendship or the death of someone we love – death is an essential part of our lives. 2. Death is not the last taboo Just because it can be emotive, difficult and controversial doesn’t mean it’s taboo. Death is everywhere; it’s all around us. It’s on our TV screens, in cinemas and on the news. Funeral homes are on our high streets with mortuaries hidden in plain sight between the Post Office and the dry cleaners. We get married in churches surrounded by graves (containing real dead people!). We walk through cemeteries on our way home from work. If we say things often enough, we will believe them. So let’s stop saying that death is taboo; let’s say that death is a natural and normal part of life. Perhaps if we say it loudly and frequently, it will become the norm. 3. Death is about dealing with difficult emotions It’s hard to have conversations about difficult subjects – relationships, sex, money, mental health for example – but death really is the ultimate. It’s the subject that brings everything to the forefront, revealing our deepest, most emotional inner selves and all the fault lines in the dynamics of our relationships. We need an emotional toolkit that supports us in dealing with difficult emotions so we can have tricky conversations. If we can handle the emotions we experience in life, we’ll be better equipped to deal with the emotions we experience around death.

WE ALL KNOW HOW THIS ENDS.

4. Death is not a failure Death is not a test. We don’t succeed or fail at it. If we die because we haven’t survived an illness, that doesn’t mean we’ve failed. Death is generally not a failure of medicine either. No one loses their battle. Using combative language like this implies that a person didn’t try hard enough to live. Waging war on a disease like cancer isn’t any kind of a fair fight. People die because their treatment didn’t work, not because they didn’t fight hard enough to stay alive. 5. Our use of language around death and dying needs to change Euphemisms aren’t helpful. No one has passed away, is late, sleeping or at rest. We’re dying. We die. We’re dead. Euphemisms prevent true understanding, rather than softening the blow. Saying that someone has ‘passed away’ rather than they’ve died doesn’t make the reality of their death any less difficult to bear. Owning and acknowledging the reality of what has happened helps us to really show up for ourselves and for others. We can use the real words and tell the story as it is. By doing so we invite everyone else to do the same. 6. We need to create links between communities involved in end-of-life and after-death care

Death and dying aren’t separate. Yet after someone has died, the care team step back, handing over to another set of professionals. We need a common framework that includes everyone who works at the end of life – hospices, nursing homes, carers, hospitals, coroners, funeral directors, cemetery and crematorium staff, therapists and counsellors. We need to work together to create an emotionally intelligent, flexible and more holistic system that better serves and supports everyone. 7. Talking about death and dying can be life-affirming and life-enhancing Death isn’t something to be avoided, but to be acknowledged, considered and explored. By doing so, we can live our lives with an awareness that we’re not going to be here forever, so can make the best possible use of today. By talking about death and dying, we believe we can live fuller, richer, kinder, more purposeful and meaningful lives.

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The Life. Death. Whatever. manifesto [A + L]

WE ALL KNOW HOW THIS ENDS.

INTRODUCTION

What is Five Things?

What is Unsaid?

[A + L]

We’ve written a lot about what we’ve learned from working with dying, death and grief, but all of our words and work are underpinned by other people’s experiences. Five Things evolved from this. Everyone experiences life and death differently and walking alongside so many incredible individuals has allowed us an insight into the most closely guarded aspects of our existence. Sharing our stories is not only helpful for people going through something similar, but it can be healing in itself. Our pain being acknowledged, our experience being ‘seen’ and our voice being heard is cathartic. Knowing that we are not alone, knowing that someone else is living through something similar, understanding that there are a multitude of ways to cope, finding out that you’re not the only person in the world who is struggling, resonating with someone else’s experience – all these shared experiences help. Five Things brings together hundreds of people’s experiences. Through the project, we’ve been able to share their lessons and their words of wisdom; lessons born from their lives, their jobs, their loves, their illness, their imminent death or the death of someone intrinsic to their life, their grief. In their own words and on their own terms, they have collaborated with us to create an ever-growing social resource of information, advice, musings, reflections and learnings. Five Things belongs to you, it’s for you and it’s about you. Weaved throughout the book are just a few of the Five Things we’ve received. If you look up #FiveThings and #lifedeathwhatever on social media you’ll find many more. There’s a permanent home for them on our website and we are always looking for people to send us theirs. Please do get in touch with us via the Life. Death. Whatever. website if you’d like to contribute.

It’s often said that everyone has a book inside them, one that they ought to write. We all walk around with conversations we never had, emotions we were unable to express, unarticulated fury and disappointment, moments we wish we could take back, actions and reactions and inactions that we’d do differently given half the chance, whirring inside our minds. Words sound different in our heads to how they sound tumbling from our mouths. We may later act out old scenarios, reworking them for an audience that will only ever be ourselves. There’s no arbitrator, no one to offer a measured reply or gentle advice when we keep these words locked tight inside our skulls. Words left unspoken can disrupt and damage, they can become bigger and more troublesome as silent intruders in our minds. We need to find a way to release them, to say them or to write them. We created Unsaid to do just that. It’s an anonymous (unless you choose otherwise) interactive installation that allows people to express all the things they’ve been unable to say. It’s a collection of cathartic postcards that we take care of for you. We share your words, your burden, your sorrow, your secrets and your sadness without judgement or comment. We give those words a physical presence, we give them space outside of your thoughts and we bear witness to your experience. We’ve shared some of them throughout this book. What words have you left unsaid?

www.lifedeathwhatever.com

WE ALL KNOW HOW THIS ENDS.

INTRODUCTION

What is Five Things?

What is Unsaid?

[A + L]

www.lifedeathwhatever.com

WE ALL KNOW HOW THIS ENDS.

INTRODUCTION

COVID-19 - A pandemic in our lifetime [A]

It will be many years before we fully come to understand the far-reaching consequences that COVID-19 has had on end of life care, on medical treatments, on cancer treatments and screenings, on mental health and mental health services, on grief, on funerals, on everything. It is not an exaggeration to say that coronavirus has changed all our lives. It has turned our entire world upside down and inside out. Our fundamental sense of stability has been thrown off-kilter and nothing looks or feels the same. We are all struggling to find a way to express our feelings. I don’t think I’ve had a single conversation during this period of our lives that hasn’t been in some way dominated by COVID – our thoughts about it, our emotional reaction, the surreal sense of living through the kind of event that history books will discuss at length. And each of our experiences has been different. Some of us have been to socially distanced funerals and lost people we love, others have been touched in different ways. But we’ve all been affected by it to some degree. One of the most troubling aspects of all of this for me, as an end of life practitioner, is that because of the pandemic and the procedures that have had to be put in place to alleviate as much risk of infection as possible, people have been dying alone. We are living and dying in a way we have never experienced and its impact is profound. Hospitals have often had to refuse to allow visitors to anyone whether they have been admitted because of COVID-19 or not. People have died without anyone by their side. In an attempt to help people say goodbye, members of overstretched medical teams have been holding up mobile phones and video-calling so that people can say their goodbyes.

WHAT CAN WE DO IF WE CAN’T BE THERE AT THE END OF LIFE? 1. B uild a good relationship with the medical team. Ask them to keep you informed and ask them to help you keep lines of communication open via a mobile phone or an iPad. 2. Be really kind to yourself. Allow yourself to not be OK. Ask for help and support. Create space just for you. Some people find putting together an ‘altar’ helpful. It can have photos, letters, any reminders of your person and perhaps a candle. Take time out to process what’s happening. Allow yourself to grieve. Take all the time you need.

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3. W rite down all the things you want to say. Put them in a voice note. Say them aloud. Call your person and even if they’re unable to respond tell them all you need to say. Express how you’re feeling. Talk about it. Talk about them. Allow yourself to be vulnerable. Allow others to be there for you. 4. Find a ritual that works for you. Only you will know what that might be but perhaps walking the walks you used to walk together, talking about your person with others, sharing stories and cooking their favourite dinner. 5. Sometimes we have to try to let go of how we want things to be and embrace the unknown. There’s beauty in the unknown and sometimes all we can do is surrender to it. In the end, the most vital and fundamental thing we can do is just love our people. Through all of this, the thing I’ve come to understand with more clarity than ever before is that there is nothing more important than love. Nothing matters more.

FIVE THINGS I’VE LEARNED AFTER LOSING MY DAD TO COVID-19 AND GRIEVING IN LOCKDOWN by Helen Smith ‘On 9 March 2020, my dad Ian received a clean bill of health from his GP. On 10 March he started to feel a bit unwell. This was the last day I ever saw him. By 11 March he was bedridden, where he stayed for two weeks except for a visit to the GP where they ruled out COVID-19. On the afternoon of 23 March, he was blue-lighted to hospital, and by the evening, he was one heart attack down, on a ventilator and in an induced coma. He never regained consciousness, and died on Sunday 12 April 2020 with me, my mum and my brother by his side (albeit in full PPE).’ 1. Losing your dad to a virus that didn’t even exist six months prior is near-impossible to get your head round. It makes you feel completely alone. Remember, though, that you never are, even if grieving in lockdown convinces you otherwise. Modern technology is a lifeline, and there can still be so much support found through social media, online resources, and even video or telephone calls with friends. Although it’s never a substitute for a physical hug, there are still always people there for you.

COVID-19 - A pandemic in our lifetime [A]

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FIVE THINGS I’VE LEARNED ABOUT TALKING ABOUT CANCER AND DEATH AS A BREAST SURGEON WITH BREAST CANCER by Liz O’Riordan Liz is a consultant breast surgeon who was diagnosed with stage 3 breast cancer at the age of 40.

We need to talk [A + L] ‘I believe that engaging with death is both important and overlooked. My experience tells

1. You have to talk about the elephant in the room with your loved ones. As painful as it is, get them to acknowledge that you might die sooner rather than later. Accept it. And then move on. 2. When you talk about cancer on social media, some of your friends will die. Sometimes several die in a week. It’s really really hard. And it’s OK to step back and take a break.

me that death can play a role in helping us enjoy life. I also believe that focusing on death can play a part in helping us get to grips with some big challenges – like supporting older people, climate change, a broken economic system and chronic global inequality. This may not immediately make sense but if we can face up to death we can face up to anything.’ JON UNDERWOOD, TH E FOU N D ER O F D E ATH C A FE

The more we engage with death as part of life, and life as part of death, the better our lives, and ultimately our deaths will be. But having the conversation isn’t always easy. It’s not something we’re taught how to do. It can be awkward, embarrassing and uncomfortable. Some people might refuse to have the conversation altogether; others will be full of anxiety and fear. Talking about it won’t make it happen, but avoiding it will make things much harder for everyone. In this section, we’ll learn: 1. 2. 3. 4. 5.

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Why it’s important to talk about death and dying. How to gently open up a conversation about death and dying. How to engage with death in interesting and thought-provoking ways. How to talk to children about death and dying. Questions children might ask and how to answer them.

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3. You will think crazy, irrational, illogical thoughts that many people won’t understand. A friend told me he was almost pleased when his cancer came back because he could finally stop waiting for that day to come. And I got it. 4. Get your life in order – wills, lasting power of attorney, finances. I only did that when my cancer came back but it was a huge relief knowing that everything was sorted. 5. Thinking about your funeral doesn’t have to be sad – watch Peter Kay’s Car Share (series 1, episode 2) when Kayleigh plans her funeral music for her audience – it will make you smile.

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We need to talk [A + L] ‘I believe that engaging with death is both important and overlooked. My experience tells

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How to talk about death and dying [A + L]

If we can find a way to broach this subject, we may find that our anxieties and fears will reduce. By giving everyone a chance to share their concerns and worries, and listening to each other with an open heart and mind, we can all take a more empowered approach to the end of our lives. We’re always working on ways to help people to have what can be a really difficult conversation. Here are some of them: 1. O pen up the conversation with gentle questions. You don’t have to be overt. Gently talking around the subject at first can really help. There’s nothing wrong with doing a bit of stealth questioning! From experience, if you offer something of yourself it can begin the conversation. Show that you’re comfortable having conversations about life and death. Set an example. ‘I’m making a list of all the books I’ve read that I’ve loved to give to my children in the hope that it’ll inspire them to read them too. I hope they’ll pass it down to their children and their children’s children too. What are your favourite books?’ 2. You could try discussing your dreams for the future and your own bucket list. Share all the things you still want to achieve and express your concern that you won’t have time. ‘I’ve been thinking that I’d really love to go to Alaska. Since watching Northern Exposure when I was really small it’s been on the list of places I want to see. I’d feel really cheated if I didn’t get to go before I die. Is there anywhere in the world you still want to visit?’ 3. Share your regrets. Ask about theirs. ‘I really regret not being a better friend to Jay. I look back and can’t believe how badly I behaved. I wish I could make things better between us. Is there anything you regret? If you could go back in time, what would you do differently?’ 4. Confess the things that frighten you, even if they’re not rational. ‘When it’s my time, I want to be cremated. After watching a scary movie when I was young, I’m terrified of being buried alive.’ 5. A nother way in is to talk medically and factually. By removing emotion from the topic sometimes people feel safer to begin to explore it. Thoughts and feelings will of course come into play but discussing things ‘as a matter of fact’ can be an excellent starting point. ‘I was watching a documentary on the internet about cutting-edge treatments for people with lung cancer. Did you know that there’s a new treatment being trialled in Australia? The problem is the side effects...’

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6. I f you listen to someone talking about being unwell or someone close to them having died, they’ll often begin by telling you the basic facts of their illness or their death. Some people find it easier to begin by focusing on the why, how, when and what, rather than on the feelings attached to the story. 7. You could try opening up the conversation by talking about the music you’d like to be played at your funeral. Almost everyone we’ve ever met has had an idea about the music they’d like, or not like. It’s a gentle and sometimes humorous way of opening up a bigger conversation. ‘I can’t decide on any song I’d like to be played at my funeral but I’m compiling a long list of all the things I don’t want! What song would make you turn in your grave?’

THE 10 MOST REQUESTED TR ACKS AT MORTL AKE CREM ATORIUM IN 2020 ‘My Way’ – Frank Sinatra ‘Time to Say Goodbye’ – Sarah Brightman & Andrea Bocelli ‘What a Wonderful World’ – Louis Armstrong ‘Unforgettable’ – Nat King Cole ‘Strange on the Shore’ – Acker Bilk ‘Somewhere over the Rainbow’ – Eva Cassidy ‘Bring me Sunshine’ – Morecambe & Wise ‘Moonlight Serenade’ – Glenn Miller ‘Three Little Birds’ – Bob Marley ‘I Will Always Love You’ – Whitney Houston

Remember – these topics are too big for one conversation. You’re planting seeds, watering them and watching them grow. If we have the courage to start talking about these things when there’s no sign of illness to load them with the burden of sorrow, they will eventually become a normal part of our everyday way of being. If someone really doesn’t want to talk about death and dying, you can’t make them. You might find it helpful to read Anna’s words on the complexities of being on the same emotional page in the section about death and dying (see p. 91). If you’re looking to engage with death as a part of life, there are other more obvious ways to engage and open up the conversation:

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How to talk about death and dying [A + L]

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1. Go to a Death Cafe A Death Cafe is a gathering of strangers who come together to talk about death while drinking tea and eating cake. It’s run as a social enterprise so the gatherings are all run by volunteer hosts. They take place everywhere from front rooms to cemeteries, festivals, tea shops and local libraries. You can’t have a Death Cafe without cake. When discussing something as unknown and uncertain as death, something as reassuringly of this world as cake is essential. Impressively, more than 10,000 Death Cafes have been held around the world since the movement began in our friend Jon Underwood’s front room in London in 2011. That’s a lot of conversations and a lot of cake. It’s important to understand that a Death Cafe is simply a group of people meeting to talk about death. It’s not bereavement support, grief counselling or group therapy. You can find your nearest Death Cafe by typing in your postcode on the Death Cafe website: www.deathcafe.com 2. Host a Feast of Life, Taste of Death Feast of Life, Taste of Death is one of the most delicious ways to talk about death. It takes the form of a communal meal, where people come together to share stories over food that means something to them. It’s an accessible way of engaging with the difficult emotions that come up around death by breaking bread together. All you need is a few people (three to 12) who are willing to come together to share stories over the food that’s been significant to them at some point in their lives. You could host the Feast of Life around your kitchen table at home, or you might want to hire a space such as a community hall. It can take any format, such as a candle-lit supper or even a picnic in a park. When we last held a Feast of Life, we sent out this message, giving our guests plenty of time to reflect upon food that had been important to them: ‘What would you eat if you knew you were dying? Is there a dish that makes you feel alive? Is there something that reminds you of the best of life? What food have you been given to help you through the tough times?’ Once the feast was laid out, we asked everyone around the table to introduce themselves and the story behind the food they’d brought along – roasted tomato soup, oranges, Caribbean takeaway, jacket potatoes with beans, cheese and coleslaw, ackee and saltfish patties, pho, chocolate brownies, Swedish pancakes, honey-roasted sweet potatoes and so much more.

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It was an opportunity to feast on life, talk about death, share beautiful stories and connect with friends, old and new. For more information, have a look at the website: www.lifedeathwhatever.com/feast-of-lifetaste-of-death

3. Host a funeral-awareness party It’s so much easier to arrange a funeral when someone has died if you already know about funerals. It’s difficult to make empowered decisions about a funeral if you don’t know very much about them. A funeral-awareness party is a little like a Tupperware party. You invite a group of friends to come together to learn about funerals as well as to talk about what you might like for your own. It doesn’t have to be gloomy. You can serve refreshments and have a good time learning about funerals and discussing what you’d like to happen at your own funeral. You could invite a modern funeral director or experienced celebrant along to share their experiences and answer your questions. To get the conversation flowing, you might want to discuss some of the questions on p. 167–168. 4. Go for a walk in a cemetery There’s nothing quite like a stroll through nature to see the cycle of life and death in action. Cemeteries are often little-used yet beautiful green spaces, full of wildlife and nature. A Sunday afternoon spent walking the dog while looking at the old graves could be a way of initiating a difficult conversation. — John’s Experience ‘We went for a walk in an old cemetery on the other side of town just after John received the news about his cancer returning. It’s more of a wildlife reserve now. He was really reluctant to talk about what was going to happen next, so we walked in silence. In the oldest part of the cemetery, he spotted a grave for a lady called Iris who had died in 1895. He began telling me about his Aunt Iris who had died when he was a child. I asked how it had made him feel and he started talking about how no one in his family had acknowledged it and how much that had impacted their lives. He said he didn’t want that for his own family.’

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5. Watch it on TV When Hayley Cropper died on Coronation Street and was cremated in a floral cardboard coffin, more people than ever before googled ‘cardboard coffin’. Her, at the time, unconventional choice, prompted a lot of conversations in front rooms all over the UK. When Emmerdale’s Lisa Dingle died in May 2019, a beautiful scene from the soap showed the funeral directors collecting her from home in a private ambulance, as her family stood around the driveway and paid their final respects. In a zoomed-out shot, the private ambulance was filmed slowly moving away, as life itself continued in the countryside surrounding her farm. Death and dying are much easier to engage with when we’re not the ones directly affected. Watching a TV show or movie together and then talking about whatever comes up can be an easy way into a difficult conversation. Many moons ago, bored one Sunday afternoon, I turned on the TV and Who Will Love My Children? was playing. It broke my heart and I cried for several hours after I’d stopped watching. I still talk about it now. It has precipitated more conversations about death and dying than anything I’ve read or watched since. Here are a few of our suggestions for films and TV series that may inspire a difficult conversation: On illness – Iris, Still Alice, The Diving Bell and The Butterfly, Bodies On grief – After Life, Manchester by the Sea, Terms of Endearment, Stepmom, Who Will Love My Children?, Me and Earl and the Dying Girl, The Fault in our Stars On life and death – Beaches, This Is Us, Big Fish, Fried Green Tomatoes On funerals – Six Feet Under, Harold and Maude, Almost Heaven, Departures, Captain Fantastic, Still Life Remember, it doesn’t matter how you start talking or what prompts the discussion, it just matters that you find a way to have the conversation.

FIVE THINGS YOU SHOULD KNOW WHEN TALKING ABOUT DEATH by Tracey Bleakley Tracey is the chief executive of Hospice UK, the national charity for hospice care. In her role, she encourages everyone to have an open and honest conversation about death. 1. We might not like to hear it, but we are all going to die someday. Talking about it won’t make it happen, but ignoring the topic makes it harder for us to make our plans, and to help others make theirs. Each year people put on hundreds of events as part of the Dying Matters campaign – each different, but each helps people have these conversations. 2. Being willing to discuss death, and to make our plans, can be a sort of final gift to those close to us. When our time comes, they won’t need to argue about the funeral, or who gets what, or anything. If you’ve made your plans, they will know you are getting the end-of-life care and send-off that you want. 3. There’s something quite liberating about having these conversations and getting your plans in place. Once it’s done, you can get on with getting the most out of the life you have, knowing that when you die all the key practical matters will have been taken care of. 4. About 1 per cent of the population dies each year, and each one of those deaths affects many others. If we’re more comfortable talking about death, we’re better able to help friends, colleagues and everyone we know who is going to be dealing with grief. 5. Death will rarely be a happy topic of conversation, but it is an important one. The least that we owe to each other is to take part in that conversation when someone we know wants to have it. Everyone’s different in how and when they approach it, and even if we aren’t ready yet ourselves, we need to help our friends who are.

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This could be the last time [L] ‘There’s nothing worse than too late.’

Janey, I wish I’d said goodbye. I was looking for the right words, and then you were gone. I still haven’t found them. R. #UNSAID

If only. #UNSAID

CHARLES BUKOWSKI

Brilliant but wild was the best way to describe David. His unconventional lifestyle choices meant that he’d made a home for himself and his ideas in an open-minded cafe in East London. Its easygoing atmosphere was created by an eclectic collection of charity shop board games, sofas found on the street and donated books. It was grimy but charming if you didn’t mind washing your own tea cup and eating cheap biscuits that had gone soft having been left out all night. It was a refuge for the waifs and strays of London: the brilliant, the broke and the brilliantly broke. David claimed to be the manager, but he wasn’t. Organisational structures and budget forecasts were of little interest to him. Someone else did that. He was the cafe’s spiritual saint, charming customers and staff alike, somehow keeping the ramshackle place going with his enthusiasm. During my early days as a newly trained funeral celebrant, I’d sit on the cafe’s uncomfortable sofas, writing ceremonies, pretending I was there just to do work and not to see David. The internet never worked so my phone data was constantly drained. The music from the noisy club next door made concentrating impossible. But it was all worth it when he’d come over and put his hand on my shoulder, or whisper words of encouragement into my ear. He had a kind of wit, cheekiness and charm that meant he could get away with pretty much anything, no matter how ridiculous. He could parachute into any situation, anywhere in the world, and not just come out unscathed, but glorious. David danced on the streets, burst into song and spontaneously jumped aboard a mini scooter and sped around the tables when the cafe’s guests were behaving a little too seriously. He blew bubbles on shoppers on Oxford Street while covered in glitter. He spent evenings with me sitting in his hideout, sculpting our feelings using the clay he kept under the futon. He created bold phallic wonders, while mine looked like blobs of overweight confusion. It all made me cringe. I thought he was ridiculous. He was a ’60s stereotype, a caricature of himself, stuck in 1966 and not 2016. He was a dreamer who needed to realise the world wasn’t his for the making or the taking. I wanted to present him with a council tax bill and leave him to deal with it. Yet I thought he was brilliant. He was the most beautiful, dangerous, unusual, fiercely intelligent and interesting boy I’d ever come across. I’d never met anyone who could make my eyes roll and my heart flip at the same time. It was quite the party trick.

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You taught me that love can’t exist without fear. Every night for two months I lay on my kitchen floor and cried.

I’m so very glad you didn’t.

I just wanted to let you know that I still send you emails although I know you’re not here any more and I still have an obsession for Cigarettes After Sex. I love you.

#UNSAID

I thought if I begged the linoleum hard enough, you’d come back.

That day in the hospital. We both knew. And nothing needed to be spoken. I miss you. #UNSAID

I found him Dad. I miss you every second of the day. #UNSAID

If we acknowledge and accept our mortality, can we live a better life?

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Anna Lyons & Louise Winter

End-of-life doula Anna Lyons and progressive funeral director Louise Winter have joined forces to share a collection of the heartbreaking, surprising and uplifting stories of the ordinary and extraordinary lives they encounter every single day. From working with the living, the dying, the dead and the grieving, Anna and Louise share the lessons theyâ&#x20AC;&#x2122;ve learned about life, death, love and loss.

Life. Death. Whatever.

We all know how this ends is a new approach to death and dying, showing how exploring our mortality really can change our lives.